Patient POV’s Best of 2011

Here’s my “best of 2011” Patient POV, based on discussion, feedback, and commentary from readers and bloggers.

1. Writing About Alzheimer’s and Dementia Gets Complicated.

Be careful what you wish for: do we want more people screened for Alzheimer’s disease, put on questionable drugs, is the amyloid hypothesis our best bet? Think carefully before you push for counting folks and raising awareness.

2. Inattention to Drug Safety in the Elderly Leaves Generations at Risk.

You would be shortsighted if you read this as just an anecdotal story of my mother’s unlucky break with high-dose simvastatin. More importantly, we are drugging the elderly with medicines that were never tested on them, at doses that are poorly tolerated. Should FDA do more at the front end? Should comparative effectiveness research give us better information on drug safety?

3. On Disclosure, Transparency, and Standards: A Call for Uniform Standards in Patient Advocacy.

Is undisclosed industry sponsorship polluting what we hear about the patient’s point of view? Possibly. Let’s get a handle on who is speaking up for the patient, whether industry is driving the discussion, and letting readers decide from there. Are other agendas pushing the patient point of view?

4. LGBT Healthcare: Out of the Closet in New York

LGBT healthcare made some headway this year, but it is not all rosy. The Institute of Medicine released it first major report on LGBT healthcare, raising the need for better access to care, acceptance, and research. In New York, same sex marriage finally passed, and NYC Health and Hospitals Corporation, the country’s largest public health system, adopted a landmark program aimed at educating staff on appropriate treatment of LGBT patients.

5. How One Man Faced a Prostate Cancer Diagnosis.

One of my earliest posts on how a man sought a physician in the northeast to follow him with active surveillance for prostate cancer, documented the difficulty finding doctors who are comfortable with active surveillance. This post pre-dated the US Preventive Services Task Force on PSA screening and the National Institutes of Health Consensus Development Panel Draft Report toward the end of the year. It’s an interesting case study in bias to treat for many American doctors.

6. Planning Orthopedic Surgery: Ask Ahead About Aftercare

Two patients from different parts of the country talk about the lack of aftercare that meets patient needs following orthopedic surgery. Unfortunately, once orthopods cover themselves during the immediate post-op period, they are difficult to find if you have issues with pain, activity limitations, and more.

7. What the Macular Degeneration Drug Trial Means

The Comparison of Age-related macular degeneration drug Treatment Trial (CATT), an NIH trial, reported the first outcomes, finding that the cheaper alternative (Avastin) was just as good as the costly one, Lucentis. 2011 was an encouraging year for people with macular degeneration. There is much more to follow going forward: I hope to take a look at aggressive marketing of high-cost drugs, particularly when there is no proven added benefit.

8. On Don Berwick and the Future of Healthcare Reform

Just before the holidays, Don Berwick, head of the Centers for Medicare and Medicaid, resigned, after the GOP rallied to get him out of town. This is a look at what he brought to healthcare for patients and the patients’ point of view. Good luck, Don. We’ll miss you.

9. On Mother’s Day, Invest in Maternal Health

This has been a terrible year, with threats to Roe v. Wade, HHS Sebelius reversal of plan B, and more gutting of women’s health. This post was written before many more adverse actions reversed headway in the United States for women’s health.

10. What’s the Patient Got to Do With It?

An important post to leave you with before 2012, this raises the promise of bringing patients in at the front end to help us get to a true patient-centered healthcare system. Will we get there in 2012? Will health reform survive? With initiatives like the Patient Centered Outcomes Research Institute really elicit patient points of view that matter?

That’s it for 2011 from me. I’d love to hear more from you on what you’d like to see here in 2012 and  I hope to bring you more stories that drive healthcare change.

Best wishes to all of you for  a happy and healthy 2012!


Heading Into Flu Season, Vaccination Rates Could Be Better

More People Died in the 1918 flu pandemic than in World War I.

Courtesy, US Public Health Service

Flu vaccination rates jumped up after the H1N1 flu epidemic in 2002, and it is no wonder: young people, seemingly healthy with strong immune systems, and many more, succumbed to the flu. Deaths, respiratory distress, and coma had a face. Until then, deadly flu and debilitating complications seemed remote. In fact, vaccine experts like Paul Offit, MD, from the University of Pennsylvania, worry that younger generations have no concept that flu can be rapidly fatal, as can many childhood infectious diseases for which we have vaccines that offer protection.

Have we eliminated the memory of these diseases?–Paul Offit, MD, University of Pennsylvania, Philadelphia

At a recent meeting at the National Institutes of Health, Offit, raised the issue that many young pediatricians did not grow up with  diseases like flu and measles and that medical schools don’t even teach very much about vaccination. A link to the talk is posted on the blog, Respectful Insolence, which is worth following if you are interested in the challenges in getting people to appreciate the public health value of vaccines.

Unfortunately, the media often presents pro-vaccine, public health people like schoolmarm authoritarians.  At the other end of the spectrum, antivaccine folks portray their position with anecdotes, alarmist websites, and call for resistance. The media sensationalizes the story. In the backdrop of medicalization of so much of our lives, it is  perhaps not so difficult to see why anti vaccine messages take hold. Add to that the self-help and empowerment movement, it is not so tough to see why people hold to the perspective that they know better than outside authorities how to shore up their immune system. I am all for patient empowerment and informed choice, but not when the movement rejects science, co-opts empowerment, it must be rejected out of hand.

Seth Mnookin’s The Panic Virus provides the most compelling analysis of why anti vaccine forces have attracted so many people. If you are still looking for a gift for someone, order it. Mnookin told me that the paperback is now available for preorder, and it will be out in a few weeks.

Vaccine Outreach

In recent years, the Centers for Disease Control and Prevention (CDC), World Health Organization (WHO), and community health groups have been pushing hard to get people vaccinated, and some strides have been made. According to CDC’s Kathleen Sheedy, CDC has made a concerted effort to make flu shots readily available and close to home. If you are reading this now, check your local drugstore to see if you can get the flu vaccine, and if you don’t know where to go, check CDC’s Flu Vaccine finder.  Many insurers cover them for free.

CDC has stepped up efforts to reach out to everyone and especially high-risk groups, including pregnant women and children.Even so, according to a recent CDC Internet Panel Survey, as of mid-November, only about 44% of women that were pregnant between August to November for the 2010-11 flu season and 43.2% for the 2011-12 season were vaccinated; 49% of women that were pregnant between October-January 2011 for the 2010-11 season were vaccinated.

Less than half of pregnant women are getting vaccinated for the flu.

CDC Internet Panel Survey, 2011

The flu can cause pregnant women to become very sick. Additionally, infants younger than 6 months are at high risk of severe illness from the flu.

Should you get vaccinated? Yes. Everyone 6 months or older should get the flu vaccine. — CDC’s Advisory Committee on Immunization Practices. All children, people with asthma, diabetes, and heart disease, and those who live in institutions like nursing homes, are at increased risk for the flu and flu-related complications.

So think about what you are bringing to someone’s house this holiday season if you don’t get vaccinated. 

I regret that this post was not out earlier. Suffice it to say that that I was distracted for good reason. The good news is that flu shots are readily available in the US. You can get covered in time for the next flu peak. It takes around 2 weeks after a shot to get covered.

Flu season is not entirely predictable, but flu activity often peaks in January or February. 

Is the flu vaccine 100% effective? No, flu mutates so you are not 100% protected, and people are worrying that the flu virus may be mutating right now. But you will get 60% to 70% immunity, depending on the strain, which is a heck of a lot more valuable than no protection.

This year’s flu vaccine contains the H1N1 protection.

Our memories are awfully short, but H1N1 was devastating to many young, seemingly hardy individuals. If I can leave you with anything before your holiday, I hope that you get vaccinated and make sure that your family and friends do as well.

Happy Holidays, be well!!

I still have plenty of stories that I did not get to in the past two months, but they are timeless. I’ll be relaxing in the next two weeks, but expect I may post here too. 

Have a wonderful new year!




Terminology Matters: Let’s Not Call It “Prostate Cancer”

If ever there was a bombshell at a National Institutes of Health Consensus Development  meeting, it happened today at the panel on active surveillance for prostate cancer.  The Panel said that terminology matters and that men who have PSA screening results that read 10 ngs or less with a Gleason Score of 6 or less should no longer be told that they have “cancer.” “The word “cancer” sets off an emotional response,” said Barry A. Kogan, MD, part of the Consensus Development Panel, and chair of urology, Albany Medical Center, Albany, NY, during the briefing. According to the Panel’s preliminary report, more than 100,000 men fit within the thresholds above, and are candidates for active monitoring.

A Seachange in Practice

If active surveillance gained visibility and credibility, it would be a seachange in practice. The Panel declined to say what term should replace “cancer,” instead leaving it to expert pathologists and urologists  to sort out the science and meaningful language. They also compared low-risk, low volume disease to entities like cervical dysplasia and actinic keratoses.

Yet abandoning the “c” word for low-volume, low-risk disease would bring us full circle from the days of John Wayne talking about the “big C.” Peter Albertsen, MD, chief and program director, division of urology, the University of Connecticut, Farmington, CT, and a solid researcher and leading advocate for active surveillance, spoke at the 3-day State of the Science meeting. He told Patient POV: “I don’t think we can abandon this terminology,” a telling remark coming from a strong proponent of active surveillance.  If he expresses discomfort with abandoning the “c” word, I suspect that it will not fly. He was unaware of the terminology change when we spoke, but he said that he “would be more comfortable with calling it a very slowly progressing cancer.” Where Albertsen sees the major value of the conference is in giving active surveillance more visibility and credibility.

Finding  Doctors Who Back Active Surveillance

In the briefing, Michael Barry, MD, internist at Massachusetts General Hospital, Boston, MA, and president of the Foundation for Informed Medical Decision Making, said that men should ask around if they are looking for a doctor who uses active surveillance protocols.  That’s a fine suggestion, if in fact such doctors are plentiful. However, as I showed here before , a New York man consulted with at least 5 physicians before he headed out of town to find someone who would follow him with active surveillance. It exhausted him. In terms of overuse of medical care, New York often scores high on the list.

I see this as problematic.  Current patient satisfaction dimensions are chock full of general questions like how long a patient has to wait to get in for an appointment, whether the office staff is congenial or not, or whether the office is clean enough, but absolutely no information that matters so much more to patients, like the volume of procedures doctors do, their orientation, and there are no outcomes data that can be trusted.  This needs to shift, if all the academic scholarship is to be worth its weight.

Some doctors are simply too entrenched in treatment for a variety of reasons so that active surveillance is anathema. Further, many physicians claim that they have active surveillance protocols, but the exact thresholds beyond which they would advise treatment and whether they are based in science or opinion are not easy for patients to pinpoint. For example, many doctors may be uncomfortable with cutpoints as high as 10 ng PSA and Gleason Score of 6 less for “cancer.”

I asked Ashutosh Tewari, MD, Director of the Robotic Cancer Institute, Cornell University Medical Center, NY, to clarify his position on active surveillance. He has gone on record at urology meetings as supporting active surveillance and has invited leading researchers who back it to speak with residents. He emailed me back: “Active surveillance is the right treatment and we do it here all the time.” Later, he called me to tell me that he has “hundreds of men on active surveillance.”  Tewari is a leading robotic prostatectomy physician internationally. Robotics is an extremely lucrative field. Many people might wonder whether people invested in robotics could be totally objective. One physician who asked not to be named, remarked: “There is too much money to be made to really push it [active surveillance].”

Perhaps  one day, volume of procedures will not be so inextricably linked to physician income. Health care reform with incentives for value and good outcomes would be a start.